Pages

Sunday, March 10, 2013

It's not just kids who say the darndest things. It seems like everyone does, especially when it comes to people with chronic illnesses. Including those who should know better.

I have a friend I've known for almost 30 years (eek, that really dates me!) who has Crohn's disease, an autoimmune disease that attacks the gastrointestinal system. In the past year, the friend has developed an autoimmune form of alopecia and has lost all his hair. Everywhere. Including eyebrows, eye lashes, legs, arms, etc.

I'm mortified to admit that I made a (bad) joke about wishing for just a teensy bit of that for Scott, whom I'd recently been teasing about how the only gray hair he has is the stuff growing out his ears. My friend somberly responded, "Don't wish it on him. I wouldn't wish it on anyone."

You'd think, after dealing with thoughtless things people say to me for the six years since I became chronically ill, that I'd know better. And I do. But that doesn't always keep me from opening my mouth and inserting my foot. I try to keep that in mind when people say things to me that put my teeth on edge.

I'm pretty sure medical professionals think they're empathizing when they say things to me like, "You're too young to be this sick!" or "Wow, I've never seen such a thick file on someone under 75 years old!" (Hey, that last one will be going away soon as all the doctor's offices are transitioning to electronic medical files! But I'm sure there will be another equivalent -- maybe about gigabytes of data in an electronic file.)

I have a friend who telecommutes from coffee shops all over Portland for her job, which is based on the East Coast. She keeps telling me to come meet her for lunch or coffee, which would be appealing, but parking is so limited in the areas she favors. "Oh," she says, "I never have trouble finding parking. I just park up above 20th and walk down to 13th or below." Which is great for her, but not so great for me. I might make it down to the coffee shop, but considering that socializing by itself exhausts me, I fear I wouldn't be able to make it back to my car afterward. I've explained this to the friend multiple times, and I don't know if she just doesn't get it or doesn't want to get it. These days, when she says it, I just respond, "Yeah, that doesn't work for me. I wish it did."

Most things people say to me are the same things all my chronically ill friends get tired of hearing:

"But you don't look sick!"

"You look great! You must be feeling better!"

"You need to get some exercise. That will give you more energy and make you feel better!"

"Oh, my grandmother has joint pain in her hands/wrists too!"

"Stop sleeping so much and you won't be so tired!"

"Oh, I had the same problem(s) but I started taking xxxxx supplement/herbal remedy/etc and now I feel great! You should try it!"

And so on and so forth.

Most people say these kinds of things either with the best of intentions or simply without thinking about it.

Like Leslie, I do wonder about the medical professionals who complain about things like how hard it is to get blood for me or the "extra" work my being medically complicated causes them. After all, they wouldn't have jobs without patients. And more importantly, it's not like I'm choosing to be difficult or complicated. I'd definitely prefer to be healthy!

What kind of tactless or stupid things do people say to you?

If you're looking for thoughtful things to say to chronically ill people, here are some links to good suggestions: